That's a rare one. I think I've maybe heard of it once before. Since it's lymphatic, you might check with the ALL or CLL forums, depending on if this form of leukemia is acute or chronic. If you'll back out of this forum and click on the "Licing with..." link, you'll see ALL at the top of the next page and CLL is the third link listed.
Hope you can find someone to talk with about it.
I was diagnosed with LGL back in early 2008. Tex is correct it is a rare disease, unfortunately it's not rare enough. I've been reading these boards for some time and occasionally searching for LGL posts. Seeing your post finally got me join. If you have any questions about LGL feel free to ask, I can tell you what my personal experiences have been with this disease.
FYI: There is a registry for patients with LGL, it is mentioned in the following link along with a contact email address. I have just recently started working with my oncologist to get on the registry. http://pennstatemedicine.org/2010/07/01/finding-and-following-of-a-killer/
Hi Tinman. How are you? The doctors now think I have had this since 2004 - that's the oldest blood test results I have and they show very low neutrophils and very high lymphocytes. I also have 10% multiple myeloma platelets. It's really frustrating to not be able to find any information about this kind of leukemia. Are you in treatment? We tried Cyclosporine but it was too toxic for my system and my neutrophils kept going up and down week after week. Next week I am to start on Methotrexate. I would love to hear what your experience has been with this disease.
I think I will sign up with the registry. One of my oncologists gave me Dr. Loughran's paper on "How I Treat LGL Leukemia". It's tough - everyone seems to react differently to this type of leukemia.
After I was diagnosed with LGL in 2008 I started looking back at my symptoms (mainly tiredness and shortness of breath). It was clear that this disease came on long before the diagnosis. What really got me to the doctor was that I started losing weight. I'm a big guy (okay, I'm fat) and I have never lost weight easily, so I knew something was wrong. The diagnosis was a long time in coming even after starting to see my Onc. It was quite frustrating. I've always wondered if the delay in diagnosis was due to the rarity of this disease (?). I know how you feel about the lack of info on LGL, it's very frustrating. Coincidentally, my Onc also referred me to the same article from Dr L (How I Treat LGL Leukemia). There is another interesting article from Dr L about a computer simulation of the key proteins in LGL. I'll try to find the link and post it. The simulation identified some avenues for further research.
Sorry to hear about your low neutrophils. I have not had too much of a problem neutrophils. My main problems have been anemia and low platelets. Early on I had to have three transfusions due to the anemia. It's interesting what you said about your neutrophils going up and down, with me it is my HGB and PLT. Your remark about LGL affecting everyone differently certainly seems to be true.
I am in treatment. My watch and wait period was fairly short. Initial treatment was with Prednisone only. This worked for a while, but it eventually became less effective. Oral Cyclophosphamide was then added to the list. I tolerated it well, but it has some long term consequences, so recently my Onc switched me over to Methotrexate. The switch lead to a sharp decline in my HGB and PLT, but they are slowly recovering.
Links to the computer simulation articles.
Silencing a Protein Could Kill T-Cells, Reverse Leukemia
Network model of survival signaling in large granular lymphocyte leukemia
When I transitioned from Cyclophosphamide to Methotrexate my HGB and PLT took a hit. Maybe this was more of an effect of the transition rather than the Methotrexate (?). I take 8x2.5mg once per week. As for side effects of the Methotrexate, I haven't noticed any. Here's hoping you experience the same lack of side effects.
Hello - my 80 year old mother was diagnosed with LGL about 6 months ago and, like others, it's clear she had the disease for a few years before diagnosis. she has been on Methotraxate for six months and her numbers have stablized. not improved, but not worse. her doctors currently seem inclined to stick with her current treatment. her symtoms were weight loss, low white blood count and low platelets. no neutrophil issues. this disease is rare, but there is info out there and also more communities like this one, including one on rareshare.org. the diagnosis is terrifying but, according to my mom's doctor, it can be managed like diabetes. peace.
My husband was diagnosed with t cell large granular luekemia last week, so we are new to this and trying to learn more about it. His oncologist has answered many questions, but hearing from others with this can help a lot as to what to expect.He started losing weight 2 years ago and was having night sweats.I knew that something wasn't right and people kept saying they thought he was under stress and that might be the reason for the weight loss.Then his legs began to hurt a lot.We went to several Dr's and not one of them could tell him anything.He had three colonsophies in two years!Plus about every test imagineable.They all told him it wasn't cancer.It was when we finally went to one Dr who checked his iron because of the leg cramps and found that he was anemic.After he did several tests, he sent my husband to an oncologist and after blood tests, which showed low red count,low white count, high lymphocytes,they did a bone marrow and it was positive that he had what the oncologist suspected.Because it is rare, he told us that most Dr's can't pick it up.We are now waiting on Medicare to aprove his chemo tablet, after a week of waiting, maybe we will know tommorow.
Sorry to hear about your husband. Seems that we all have gone through the same thing. Because this disease is so rare, I have been diagnosed with many things - from Chronic Fatigue Syndrome to Lupus- before my diagnosis. I have been in treatment since April 2011. First tried Cyclosporine but it was toxic and didn't work. I'm now on Methotrexate. Started out with 7.5 mg once a week, now up to 15 mg once a week. My neutrophils are still pretty low, but a slight improvement (900 last week). I'm on Provigil for fatigue. Also doing a lot of research on natural/alternative treatments. Just started with Immunocal, and I'm already feeling much better. I am also juicing every day and eating only organic fruits and vegetables, wild caught fish, and hormone/antibiotic/steriod-free chicken. I do believe that keeping as many toxins out of my body will help to defeat this leukemia.
Hope you husband is feeling better. I will keep everyone updated on any successes that I find that work for me.
Message was edited by: Michelle Rajotte